Finally.

5 04 2012

Today I am ecstatic.

Over the past few weeks I’ve noticed that my energy level seems better, which tells us the Tysabri is finally kicking in. And now I have the official ok to start tapering my Prednisone over the next three weeks.

As long as everything goes according to plan, three weeks from now I will be completely off the Prednisone, which is more than glorious. I will be free of the crazy side effects and able to just feel like me again.

Thank you again for all your prayers, and keep them coming! Tapering Prednisone is always when the flares have kicked in in the past and I’m hoping to just avoid that this time. If this works, I will sing the praises of Tysabri. For real.

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Tysabri

21 12 2011

I just had one of the best doctor appointments. Seriously.

I’ve been freaked out about Tysabri for a long time and every doctor I’ve talked to hadn’t helped the situation. That drug seems incredibly scary and they had no real data to offer me suggesting that it would be a magical thing. Until today.

Today I met with my new doctor. He is one of the best doctors in the country and he’s absolutely amazing. At the University of Chicago they have more patients on Tysabri than any other institution in the country so they know what they’re doing, and my doctor is an expert on this medication. He is the first person that I’ve talked to that has been able to answer all of my questions satisfactorily and give me the information I need to feel comfortable with the drug.

So here’s the dealio.

Tysabri is a slow-acting drug and will take 3-6 months to really kick in. It works by blocking new white blood cells from attaching to the intestines and causing more inflammation, but it allows for normal immune activity in the rest of the body, which means I will be able to fight off kid sicknesses that I’m constantly exposed to. It also is one of the most stable drugs on the market and research shows that if it’s effective, it has at least an 80% chance of staying effective for over three years. Three years! That’s incredibly long for a medicine. I’ve been on Cimzia for less than two years and I really felt like that had a good life time as far as medications go.

They ran a test to see if I had the virus that causes the scary brain disease and I’m negative for it which means I have a super tiny chance of that side effect. They also said that what people don’t talk about is that PML, the scary brain disease, happens in immunosuppressed patients, i.e. patients who are on meds that I’M ALREADY ON. As in Prenisone and Cimzia. Yeah, nobody said I’m already at risk so I might as well take a ¬†medication that works!

Once they confirm that I’m all good to go they will get me set up for a once a month infusion and I get to go off my Cimzia and azathioprine and will only be on Prednisone as long as it takes for the Tysabri to kick in. I’ll be able to slowly taper over the next few months and then that’s it. All I’ll have is an IV once a month for an hour. ¬†Which is crazy incredible.

I’m feeling really positive about this and so is my family. We are excited about the new doctor and excited about the possibilities that this gives me. He even said that next year a new version of this medicine should come out that should make it even less likely to cause PML, and if all these things stop working, even more new medicines look likely to be ready in the next few years. So if Tysabri works like it should and gives me a three year window, I’ll have even more options to look at from there.

Thank you all so much for the prayers. I firmly believe that they work. If I hadn’t gone to this specific doctor I never would have been comfortable making the decision to try out this medication and it would have made me constantly stressed out and anxious. This is the first doctor in a long time who has looked me in the eye and said, “You’re going to be just fine,” and meant it. How awesome is that?





Mission Accomplished!

18 11 2011

We had pretty good news today!

My scope went really well and everything looked good. While that doesn’t show what’s going on with the whole middle part of my intestines, it bodes pretty well. The steroids are working. While they aren’t supposed to be a long term drug, at this point they are recommending that I stick with them for a while.

I still need a CT scan but I’ll get that at home. Hopefully I’ll get it before my appointment with my new doctor, Dr. Rubin, at University of Chicago. Mayo was pretty excited that I was going to be seeing him which makes me happy. He specializes in hard to treat cases, which I am.

At this point, unless I go off the steroids and cause a flare, I don’t really qualify for a lot of things. You need to prove a flare before you are allowed to take Tysabri or be a part of clinical trials. The steroids always work well for me so my inflammation is down. As long as the CT scan looks good, I’ll be ok for a while.

The prednisone is killing me though, so they are letting me taper my dose. I’ll go down five mgs a week until I get to twenty, which is far better than forty. The thought is that if I get a maintenance dose working for me the Cimzia might stretch out for a while longer, which would be fantastic.

Overall, this was a pretty good appointment. It sucks to have to be on steroids, but the side effects of those are far less than that of Tysabri or some other scary meds. This will buy us some time until new drugs can be approved and put on the market.

Before my appointment today I tried to walk around and take pictures of Mayo to give you guys some idea of the scope of this place. It’s incredible. It’s huge and there is art and everything is shiny and new and the people are just so nice.

Walking up to one of the hospital buildings

It was super windy and we literally almost blew through these doors.

Chihuly glass hanging from the ceilings

Andy Warhol has quite a bit of art hanging around here...

Anyway, I know I’m blasting you with pictures but this place is hard to comprehend. That’s just a little taste. Now we’re relaxing before our drive home tomorrow morning. I’m looking forward to being home, seeing the dogs, and taking less steroids tonight. Success.

 





Sick Day

1 11 2011

Yesterday I tried to get ready for work. I was drinking an Ensure because I couldn’t handle real food and I threw it up. This, I thought, was the last straw. I called in for a sick day.

That gave me the opportunity to talk to my doctor and sleep all day. She is putting me on 40mg of prednisone until I see her next Tuesday and then we’ll talk options then. I hate prednisone, but at this point, I clearly need it, so I’ll shut up. Maybe I’ll complain about its side effects tomorrow.

So yesterday I got down a mug of cream of chicken soup. Later some mac and cheese. A bit of cornbread. And a ton of apple juice. And I just took it easy and stayed in bed all day which is what my body needs. Sometimes I need to listen to it better.

The good news is today my stomach feels pretty normal. I think I can handle small amounts of food and copious apple juice. I’m getting ready for work now but I know people are waiting for an update, so here it is all you worriers. I’m not perfect by any means, but I’m going to work today. We’ll see how that goes.

Off to find my apple juice. Have a great day everybody.